What I Want You To Know

WELCOME

Thank you for visiting my blog! I am a home schooling mom to a brilliant, crazy, beautiful 8 year old boy, while fighting an illness called Myasthenia Gravis. Life is difficult, but God is good.

My passion is to educate people about chronic illness, invisible illness, Myasthenia in particular. I hope to encourage people to take care of each other, and let others with chronic illness know that life CAN go on.I hope you look around a bit. I'd love to hear from you, and visit your blog.

My Designer

I do product reviews and book reviews on this blog, which are my opinions. Some of these products I receive for free to do the review. Other times it's just my opinion of something really cool I found. I will tell you the difference. I also write some articles for advertisers. But the heart of this blog is my outreach to educate and support people with chronic illness.

Monday, October 4, 2010

When?

When will I learn that I can't "perform" like I used to?

When will I stop letting people make me feel "less than?"

When did I become this person who can't think quickly, or remember more than 2 things, or make mistakes I never would have made, or....

Today we were going to start our first day of "real" school with "real" curriculum. I was going to write my own, but obviously that didn't happen. Last night I probably got a total of 3 1/2 hours of sleep like 15 minutes at a time. If you ever want to feel like you've got a hangover without having a drop the night before, I highly recommend this process.

Jacob's favorite phrase right now (especially, it seems, at 3 AM) is "Mommy I want you!" Now granted, the first 2, maybe even 3 times you hear this, it's heart-warming. Your precious child is confirming his love and desire to have you near him. Who doesn't want that?

I'll tell you who. ME!!! By 4 AM, when you've heard this phrase 672 times, along with the perfectly pitched whine that doesn't quite break glass, it's not quite as endearing as it once was. I spent all day in a p!ss!ing contest with Doug yesterday. (Sorry for the vernacular, but that's exactly what it was.)

He was grouchy, and I was in a "I'll show you I don't need you to do anything and I can do it all myself" mood. So not only did I write Jacob's goals for the entire school year, but I also wrote our daily schedule for school (like what days we do what subjects), MY daily schedule (which this morning looks hysterical...I don't know what the h#ll I was thinking....this is like a 25-year-old-soccer-mom-Carol-Brady schedule. What a joke!) and the individual daily schedule for the first week (individual concepts for each subject on each day).

When will I stop comparing to other moms?

I separated and folded laundry, got roast ready and put in the oven, played with Jacob, got his meals, yadda, yadda, yadda. I just keep pushing and pushing.

I hate that I can't perform like I used to. I used to be the quickest one, not the slowest. I used to be able to be typing a pickup into the computer, be on the phone with a driver, answer another driver on the radio and still listen and understand the conversation going on at the window!

Now I can't chew gum and tie my shoes at the same time. And it makes me angry. Which is stupid, because I've dealt with this b.s. disease for over 10 years now....which makes me even angrier that I can't get it under control....

7
comments:

When I start questioning why I am stuck, I usually spiral down into depression very quickly. Learning to accept hard things isn't a one time thing, which really sucks, but also means I haven't failed when I haven't "learned" yet.

Dude - this was a hard week for you on a lot of fronts. Take it easy woman! You'll be doing the schooling for a while so no need to get it all done in a week. ;)Besides once he hits 12, he'll forget everything anyway.

It is so hard to be content within our limits, especially when those limits have changed. Take heart - we all have crappy days - we all have limitations that have changed our lives in some way (I am in no way belittling your disease - just empathizing without completely understanding what it is). Hugs!

Hey there, Wonder Woman! I know it's frustrating (and not because I "can imagine" - I live in pain & have not yet learned to make it my friend) that we can no longer do what we did as quickly and as long, but I have learned that it's frustrating for our caregivers as well. They really hate that we are like this & they hate they can't just fix it, so I've learned that when he tries to help, it's better for us both when I let him. He's happy 'cuz he thinks he's doing something great (and he usually is) and it's tons easier for me...it does NOT mean that I've succombed to this crap, it means I've learned a way to cope with it. Please don't beat yourself up anymore, you're already bruised enough for this week!! Oh, yeah, and I can sure relate about the 2 hrs of sleep, 15 mins at a time - that's aggravating as all get out!! Chin up, sweetie, tomorrow will be different. Maybe better, if you're lucky! Hugs (but not too tightly!) ~k